{"id":3468,"date":"2018-01-18T07:40:08","date_gmt":"2018-01-18T07:40:08","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/18\/ii-edicion-de-los-talleres-que-organizamos-junto-al-vall-dhebron\/"},"modified":"2018-01-18T07:40:08","modified_gmt":"2018-01-18T07:40:08","slug":"ii-edicion-de-los-talleres-que-organizamos-junto-al-vall-dhebron","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/18\/ii-edicion-de-los-talleres-que-organizamos-junto-al-vall-dhebron\/","title":{"rendered":"II Edici\u00f3n de los Talleres que organizamos junto al Vall d\u2019Hebr\u00f3n"},"content":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

Tras el \u00e9xito y aceptaci\u00f3n de la primera edici\u00f3n (enero-marzo 2017), desde el \u00c1rea de Gen\u00e9tica Cl\u00ednica y Molecular y la Unidad de Enfermedades Raras del Hospital Vall d\u2019Hebron, conjuntamente con FEDER, se propone la realizaci\u00f3n de este curso de formaci\u00f3n con los objetivos de aumentar la informaci\u00f3n y conocimientos en todo aquello que es com\u00fan en las enfermedades raras.<\/p>\n

El Taller para pacientes con enfermedades raras, m\u00e1s all\u00e1 de la propia enfermedad pretende facilitar conocimientos de conceptos b\u00e1sicos y enfoques de los problemas que sean \u00fatiles para el acceso y participaci\u00f3n de cursos m\u00e1s avanzados y reuniones multidisciplinarias, para ayudar a entender qui\u00e9nes son los profesionales implicados, a familiarizarse con la terminolog\u00eda m\u00e9dica b\u00e1sica y a proporcionar recursos b\u00e1sicos para gestionar y colaborar en una asociaci\u00f3n de pacientes m\u00e1s fuerte y enfocada a establecer objetivos claros en beneficio de los afectados y sus familias.<\/p>\n

Esta iniciativa est\u00e1 dirigido para todas aquellas personas interesadas, y podr\u00e1n asistir representantes por cada asociaci\u00f3n (ya sea una persona afectada por una enfermedad poco frecuente, trabajador, junta directiva, etc.). Se sugiere que haya representatividad equitativa de las asociaciones.<\/p>\n

Lugar: Mi\u00e9rcoles de 16.00h a 18:30h en la Sala de Reuniones del M\u00f3dulo de Gen\u00e9tica Cl\u00ednica y Enfermedades Raras del Hospital Vall d\u2019Hebr\u00f3n.
Inicio de sesiones: 31 de enero.
Fecha l\u00edmite inscripci\u00f3n: 30 de enero.<\/p>\n

Para m\u00e1s informaci\u00f3n, os pod\u00e9is poner en contacto con Regla M\u00aa Garci, t\u00e9cnico del Servicio de Atenci\u00f3n Psicol\u00f3gica (Telf. 932 05 60 82 \/ E-mail: psicologia-catalunya@enfermedades-raras.org<\/a>).<\/p>\n<\/p>\n

Fuente: FEDER II Edici\u00f3n de los Talleres que organizamos junto al Vall d\u2019Hebr\u00f3n<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Tras el \u00e9xito y aceptaci\u00f3n de la primera edici\u00f3n (enero-marzo 2017), desde el \u00c1rea de Gen\u00e9tica Cl\u00ednica y Molecular y la Unidad de Enfermedades Raras del Hospital Vall d\u2019Hebron, conjuntamente con FEDER, se propone la realizaci\u00f3n de este curso de formaci\u00f3n con los […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-3468","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\nII Edici\u00f3n de los Talleres que organizamos junto al Vall d\u2019Hebr\u00f3n - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sindromecharge.es\/index.php\/2018\/01\/18\/ii-edicion-de-los-talleres-que-organizamos-junto-al-vall-dhebron\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"II Edici\u00f3n de los Talleres que organizamos junto al Vall d\u2019Hebr\u00f3n - 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